Amy Corneau’s Story
My story starts like many of yours. I was treated for bronchitis for over a year, mistakenly, then pneumonia, then I landed in the hospital with sepsis and pleurisy, and almost died. After sputum cultures by a pulmonologist in the hospital, they found Aspergillus Fumigatus, Macrobacterium Avium Complex, and pseudomonas. Sound familiar?
This was back in the mid-2000’s before they knew what to do about any of this in the USA. When I tried to connect with other sufferers, they were inhaling bleach to get rid of it! I was put on antifungals and continual antibiotics, oral and IV to try and control the pseudomonas… and later Stenotrophomonas. I was so sick! My kids were young then and they were helping to take care of me! How can this all happen?? My condition deteriorated from there and I was forced onto 24 hour oxygen with an “R2D2” machine at home and a backpack when I left the house. My fingers were blue and no one could get my infections under control. I was convinced I had Cystic Fibrosis or something else!
Finally, after many doctors and clinics, I found an Immunologist/Pulmonologist who diagnosed me with a rare Primary Immune Disorder. He put me on Methotrexate, an IV/IG, and 3 types of antibiotics. Within 3 months I was off of my oxygen. In 4 months I was almost back to normal and had to learn how to live as a non-ill person after years of being sick. Now, fast forward to 2020.
In December 2020 I came down with COVID. This unfortunately reset everything. We are talking almost 12 years in remission!!! I’m so sad and angry that I’m in this place again. Aspergillus in my lungs once more. Short of breath, my kids and husband banging on my back again. It’s so frustrating. The only positive part is that I’ve been through it before and know what we did 12 years ago. It’s a lot different going through this in my 50’s than it was in my 40’s though, and after going through COVID, too. Thank you for sharing your stories everyone. It’s very helpful to read!
31st July 2021
